Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

In Need Of Advice

patz16

Recommended Posts

patz16 Rookie
patz16
Posted

I am 16 years old in the 11th grade and have been suffering for many years. I suffered with extreme fatigue to the point where I would sleep for 14 hours and still be tired, Severe depression and anxiety,joint pain (more than my 76 year old grandmother), decalcification of my teeth. About 2 years ago I lost 40 pounds in about a month or 2 and my mother was very worried. The hospital told us : nothing was wrong with me and other doctors said the same but one found H-Pilori and I was diagnosed with that. The thing is that even though I got past that infection, I was still sick and getting worse. About a month ago I couldn't eat without getting sick or having diarreha. My cousin is glueten sensitive so his mother told mine that I should follow that diet and I did. I got so much better - I became another person , much energy , feeling great , no more pain. I realize now that there is probably a 95% chance that I have celiac disease but I really don't want to get tested because I know that I would have to go on that horrid glueten diet again. What bothers me the most is that I could get a negative even if I go back on the diet. My question is Should I go back on the diet to get tested or just live my life this way? I dont think the pros outweigh the cons Please help, I would love to hear from others.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

I am 16 years old in the 11th grade and have been suffering for many years. I suffered with extreme fatigue to the point where I would sleep for 14 hours and still be tired, Severe depression and anxiety,joint pain (more than my 76 year old grandmother), decalcification of my teeth. About 2 years ago I lost 40 pounds in about a month or 2 and my mother was very worried. The hospital told us : nothing was wrong with me and other doctors said the same but one found H-Pilori and I was diagnosed with that. The thing is that even though I got past that infection, I was still sick and getting worse. About a month ago I couldn't eat without getting sick or having diarreha. My cousin is glueten sensitive so his mother told mine that I should follow that diet and I did. I got so much better - I became another person , much energy , feeling great , no more pain. I realize now that there is probably a 95% chance that I have celiac disease but I really don't want to get tested because I know that I would have to go on that horrid glueten diet again. What bothers me the most is that I could get a negative even if I go back on the diet. My question is Should I go back on the diet to get tested or just live my life this way? I dont think the pros outweigh the cons Please help, I would love to hear from others.

Hello and Welcome!

If you have a family history of Celiac and a positve response to the diet,it's likely you have Celiac Disease of a Gluten Sensitivity.

To be tested, it's recommended that a person consume gluten for three months to get the tested. Do you want to do that?

It's a personal choice. :) Not too much help, am I? :rolleyes:

Link to comment
Share on other sites
patz16 Rookie
patz16
  • Author
Posted

Hello and Welcome!

If you have a family history of Celiac and a positve response to the diet,it's likely you have Celiac Disease of a Gluten Sensitivity.

To be tested, it's recommended that a person consume gluten for three months to get the tested. Do you want to do that?

It's a personal choice. :) Not too much help, am I? :rolleyes:

I realize that it is. I plan to attend college in Fall 2013, but I am worried I wouldn't be accommodated as well if I don't have proof that I am indeed glueten intolerant. Will I be able to tell hospitals for instance that I know I am, or would I need to be tested for that?

Link to comment
Share on other sites
pricklypear1971 Community Regular
pricklypear1971
Posted

My Dvice is to find a doctor who is knowledgeable about celiac disease/NCGI (hard to do but worth it) and explain your symptoms, reaction going gluten-free, and family history.

I would ask for vitamin level tests - irons, b's, d, k, calciums, magnesium. If these are low it could support celiac disease. Ask for HLA testing, that could also support celiac disease.

Explain your concerns about school and ask for a dx. See what happens.

My ND has dx'ed me celiac based on alternative methods above, along with my raging rash. I couldn't be tested because of steroids (rash). Of course, going gluten-free was a shot in the dark anyway, but I couldn't challenge later because it was gluten and I'd be covered head to toe in my rash...

Link to comment
Share on other sites
MitziG Enthusiast
MitziG
Posted

If it were me, I would just call myself celiac and go with it. As for college....could be tricky...but, you may get a doc to dx you without the tests based on response to the diet and your history. Dr shop if you need to! I question whether college accomodations wud be worth it. I wouldn't trust a school cafeteria to cook me gluten-free meals without contaminating them!

Link to comment
Share on other sites
mushroom Proficient
mushroom
Posted

Are you going away to college and would you have to pay for a meal plan? This would be the only consideration I could think of for getting a diagnosis from a medical professional. I think you would be much more likely to be able to work a diagnosis out of a naturopath (ND) than an alleopathic (M.D.) doctor - they are a lot more rational about considering all the facts instead of just test results.

Link to comment
Share on other sites
patz16 Rookie
patz16
  • Author
Posted

I think I should mention that I am not from the mainland United States and am from the United States Virgin Islands. I don't even think we have those kind of doctors here.

Also I do wish to go away to college, but I am not sure if I will be able to.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,091
    • Most Online (within 30 mins)
      7,748
    Grammar B
    Newest Member
    Grammar B
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Waiting for urgent referral.

      By trents · Posted

      Oh, okay. The lower case "b" in boots in your first post didn't lead me in the direction of a proper name. I thought maybe it was a specialty apothecary for people with pedal diseases or something.
    • Scott Adams
      50 YO Male Recently Diagnosed with Celiac Disease

      By Scott Adams · Posted

      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! There are other things that may cause elevated tTg-IgA levels, but in general a reaction to gluten is the culprit:    
    • cristiana
      Waiting for urgent referral.

      By cristiana · Posted

      Hi @trents Just seen this - Boot's is a chain of pharmacies in the UK, originally founded in the 19th Century by a chap with the surname, Boot.  It's a household name here in the UK and if you say you are going to Boot's everyone knows you are off to the pharmacist! Cristiana
    • Denise I
      Celiac Dietician

      By Denise I · Posted

      I am looking to find a Celiac Dietician who is affiliated with the Celiac Disease Foundation who I can set up an appointment with.  Can you possibly give some guidance on this?  Thank you!
    • Posterboy
      14 year old with Celiac & EOE still suffering...

      By Posterboy · Posted

      Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy quoting from the article.... "The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32" Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption. You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time. This may take two or three months to achieve this.......maybe even longer depending on how low he/you are. The Yellow color is from excess Riboflavin bypassing the Kidneys....... Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex...... You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening. When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement. The body won't absorb more than it needs! This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned. Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex. You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium! Here is nice blog post that can help you Thiamine and it's many benefits. I hope this is helpful but it is not medical advice God speed on your son's continued journey I used to be him. There is hope! 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
×
×
  • Create New...